July 19th, 2009 08:01 PM #1Senior Member
- Join Date
- Jun 2007
Active B12 Basics
version 1.0 - 07/19/09
The purpose of this thread is to collect in one place all the basic information somebody new to this idea might need. That way somebody new can be directed to just this one thread to find the basics. Please continue discussing all issues and questions at
The intent is to keep the needed information easy to find and not buried in thousands of posts.
The two active in the human body forms of b12 are methylcobalamin (methylb12, mb12, mecob, mecbl, etc) and adenosylcobalamin (adenosylb12, adb12, adob12, cobalamide, etc). There are many international variations in spelling and the form of the names of these substance. They are tremendously more active and effective than the two more usual forms used in most vitamins and therapies, cyanocobalamin (cyanob12, cb12, cyanideb12, etc) and hydroxycobalamin (hydroxyb12, hb12, hyb12, etc). A third inactive form of b12 is beginning to gain some notariety, glutationylcobalamin (glutathionylb12, gb12, etc). It suffers from the same problems as the other inactive forms of b12. These specific 3 inactive cobalamins can be converted to one or both active forms in very limited quantity by MOST but not all, people.
The other vitamin that we also comes in active and inactive forms is folate. Folic acid is the most common synthetic form of the vitamin. About half the people can't convert it to methylfolate, the active form in the body, in an adequate amount. The other half can barely convert an amount that is considered sufficient. Methylfolate is also known by thew brand name Metafolin. This active form can make a very large difference in effectiveness for many people.
There are a set of relatively subtle deficiency diseases that are common in our society caused by taking the artificial forms of these actiove vitamins. The artificial forms only prevent some problems and symptoms in some people. Because they are thought of as effective, the deficiency diseases that remain are invisible. They can't be seen because of the widespread usage of the synthetic forms obscurring what the lack of the active forms causes because "that problem is already taken care of therefore it must be something else". These many deficiency diseases can exist in persons already taking the synthetic inactive forms of the vitamins. The tests are designed and interpreted with the assumptions of the synthetic versions and do not adequately detect many of the deficiencies. The details of all this will be pointed out in the various specific posts
As the size of each post is limited, there willl be a series of posts covering various aspects of these substances, some very basic, some more advanced. As they will be posted by me and a variety of others as we have the opportunity, they are in no specific order. With a little luck, each post will carry a title, version and date as this page does. Updated versions may supercede earlier versions. For instance I am going to start off with a symptoms list. A month or two from now I may post that list again with just a few minor changes, and so on. So this topic should also be read from the end reading only the most recent version of each posting. I hope this helps. Good luck and good health to everybody.Freddd - Systems Analyst with websites coming soon on methylcobalamin and providing withdrawal planning and reasonable taper schedules for Oxycontin, MSContin, oxycodone, morphine, Valium and more at eztaper.com.
July 19th, 2009 08:07 PM #2Senior Member
- Join Date
- Jun 2007
Re: Active B12 Basics
SYMPTOMS, SIGNS AND CO-CORRELATES OF METHYLB12, ADENOSYLB12,
METHYFOLATE AND SELECTED COFACTOR DEFICIENCIES
LAST UPDATE -
Version 1.0, 07/13/09
mouth sensitive to hot and cold
sore burning tongue
beef-red tongue, possibly smoother than normal
sore mouth, no infection or apparant reason
teeth sensitive to hot and cold
burning bladder (no UTI)
painful urgency (no UTI)
burning urethra (no UTI)
burning muscle pain
accumulating muscle pains following exertion
lack of muscle recovery after exercise
exercise does not build muscle
extremely sore neck muscles reversing normal curvature of neck
exercise deblitates for up to a week, making things much worse
painfully tight muscles, especially legs and/or arms
frequent muscle spasms anywhere in body
muscle pain especially around attachment points to bones
Eighteen severely tender muscle spots of FMS
dyspepsia - sick stomach, nausea, regurgitation, vomiting, bloating, not emptying
altered bowel habits
loss of appetite for meat, fish, eggs, dairy, the only b12 contining foods, nutrient specific anorexia
irritable bowel syndrome
Crohns disease (direction of causality if any not established)
Celiac disease (direction of causality if any not established) - gluten sensitivity
sores, ulcers and lesions along entire GI tract or any part
reduced libido - loss of sexual desire
loss of orgasmic intensity
inability to ******
loss and/or change of genital sensations - "gloved" loss of sensation
burning genital skin sensation
unable to become aroused
low sperm count
poor sperm motility
Poor sperm quality
Zero sperm count
post partum depression
post partum psychosis
False positive pap smears, noncancerous cellular changes
child with neuro tube defects
rapid heart rate
shortness of breath
congestive heart failure
Widespread pain throughout body
Hypothyroid (direction of causality if any not established)
High urinary MMA
dizziness - even unable to walk
SAD - Seasonal Affective Disorder
impaired connection to others
mentally fuzzy, foggy, brainfog
psychosis, including many of the most florid psychosis seen in literature, megoblastic madness
strange "smells" that are not present like linen being ironed, burnt odors or tidal flats etc
strange "sounds" that are not present, rustlings, mummurings, detonations etc
deja vu experiences
anxiety or tension
impaired executive function
Hypersensitivity to touch
Hypersensitivity to odors
Hypersensitivity to tastes
Hypersensitivity to clothing texture
Hypersensitivity to chemicals
Hypersensitivity to body malfunctions, symtoms
Hypersensitivity to sounds and noises
Hypersensitivity to light and visual stimuli
Hypersensitivity to blood sugar changes
Hypersensitivity to internal metabolic changes
Hypersensitivity to temperature changes
Hypersensitivity to foods
mild to extremely severe fatigue
continuous extremely severe fatigue
severe abnormal fatigue up to and including apparent paralysis leading to death
non restorative sleep
lack of dreaming
Prolonged hypnogogic state transitioning to sleep
alteration of touch all over body, normal touch can be unpleasant and painful
alterations and loss of taste
alterations and loss of smell
loss of smell and taste of strawberries specifically
loss or alteration of smell and taste of potato chips specifically
roughening and increased raspiness of voice, mb12 can smooth it outin mid word
blurring of vision - can be sudden onset and sudden return
dimmed vision - usually not noticed going into it because change can be very slow or present for life
Visual impairment can be seen; ophthalmological exam may show bilateral visual loss
intolerance to bright light
diminished hearing - gradual onset or present for life, sudden return possible
unclear hearing, garbled
tinnitus - ringing in ears
always feeling cold
intolerance to loud sounds
intolerance to multiple sounds
inability to pick pick out one voice amongst many
Brainstem or cerebellar signs or even reversible (with mb12) coma may occur
neural tube defect not caused by folate deficiency or child with it
demyelinated areas on nerves
subacute combined degeneration
axonial degeneration of spinal cord
unsteadiness of gait
ataxic gait, particularly in dark
neuropathies, many types
progressive bilateral neuropathies
demyelination of nerves - white spots on nerves on MRIs
loss of detail and sensual aspects of touch all over body
paresthesias in both feet - burning, tingling,cobwebs, wet, hairs, pain, numbness, etc
paresthesias in both legs - burning, tingling, cobwebs, wet, hair, pain, numbness, etc
paresthesias in both hands - burning, tingling, cobwebs, wet, hairs, pain, numbness, etc
paresthesias in both arms - burning, tingling, cobwebs, wet, hairs, pain, numbness, etc
Loss of position sense is the most common abnormality (or vibration sense)
Loss of vibration sense is the most common abnormality (or position sense)
Loss of sense of joint position
hands feel gloved with loss of sensitivity
feet feel socked by loss of sensitivity
unable to release bladder, mild to severe
urinary incontenance - occasionally to frequently
fecal incontinance - occasionally to frequently
sudden electric like shocks/pains shooting down arms, body, legs shooting down from neck movement
standing with eyes closed, a slight nudge or bump causes loss of balance
most patients have signs of both spinal cord and peripheral nerve involvement
The effect on reflexes is quite variable
Motor impairment may range from only mild clumsiness to a spastic paraplegia
slowed nerve impulses
decreased deep tendon reflex
toes turn up instead of down in reflex to sole stimulation
Positive bilateral Babinski reflex
impaired white blood cell response
poor resistance to infections
decreased blood clotting
MCV > 92-94 first warning, MCV > 97-100 alert
elevated MCH (Mean Corpuscular Hemoglobin)
big fat red cells (when said this way usually with happy or healthy modifying it completely misinterpreting results of MCV
platelet dysfunction, low count
white cell changes, low count
migraine headache cycles
inflamed epithelial tissues - mucous membranes, skin, GI, vaginal, lungs, bladder
inflamed endothelial tissues - lining of veins and arteries, etc
high CRP without infection
mucous becomes thick, jellied and sticky
dermatitis herpetiformis, chronic intensely burning itching rash
frequent infected follicles
skin on face, hands, feet, turns brown or yellow if anemia occurs
poor hair condition
transverse ridges on nails, can happen as healing starts
splits/sores at corners of mouth
Hyperhidrosis - excessive sweating
glutathione, glutathione producing supplements such as NAC/glutamine
tegretol and some other medications
Relatives, grandparant, parent, sibling, child, grandchild ever needing b12 shots or supplement
brain atrophy with ileal tuberculosis preventing b12 absorbtion
STARTING AS INFANT OR CHILD
failure to thrive
frequent or continuous toncilitis
frequent longlasting supposed viral illnesses that linger and linger and linger
everything goes to the lungs for extended periods
continuous swolen glands in neck
low grade fever for years
Prolonged hypnogogic state transitioning to sleep
comaFreddd - Systems Analyst with websites coming soon on methylcobalamin and providing withdrawal planning and reasonable taper schedules for Oxycontin, MSContin, oxycodone, morphine, Valium and more at eztaper.com.
July 19th, 2009 08:12 PM #3Senior Member
- Join Date
- Jun 2007
Re: Active B12 Basics
REASONS WHY B12 THERAPIES DON'T WORK FOR MANY PEOPLE
Version 1.0 - 07/19/09
1. They take an inactive b12, either cyanob12 or hydroxyb12. The research “validating” their use was primarily for reducing blood cell size in Pernicious Anemia, keeping the serum b12 level over 300pg/ml at the end of the period between injections. They make a statistically significant effect that can be seen in lab tests in a significant percentage of people compared to placebo. They do not heal most damage done by active b12 deficiencies and have little or no effect on the vast majority of symptoms. They may even block active b12 from receptor sites hindering the effects of real b12. They both cause a keyhole effect of having only a very limited amount (estimated at 10mcg/day) that can actually be bound and converted to active forms. They in no way increase the level of unbound active cobalamins which appear required for most healing. They do nothing beneficial in a substantial percentage of people (20-40%) while giving the illusion that the problem is being treated and if it doesn’t work, oh well, that’s the accepted therapy. There is no “dose proportionate” healing with these inactive b12s because it all has to go through this keyhole. Some people are totally incapable of converting these to active forms because they lack the enzyme
2. They take active b12 as an oral tablet reducing absorbtion to below 1%. A 1000mcg active b12 oral tablet might bind as much as 10mcg of b12. Again the b12 has to be squeezed through a keyhole that limits the amount and is subject to binding problems in the person whether genetic or acquired.
3. They take a sublingual tablet of active b12 and chew it or slurp it down quickly reducing absorbtion back to that same 1% and limited to binding capacity. With sublingual tablets absorbtion is proportionate to time in contact with tissues. I performed a series of absorbtion tests comparing sublingual absorbtion to injection via hypersensitive response and urine colorimetry.
4. Of the many brands of sublingual methylb12 only some are very effective. Some are completely ineffective and some have a little effect.
5. For injectable methylb12, if it is exposed to too much light (very little light actually is too much) it breaks down. Broken down methylb12 is hydroxyb12. It doesn’t work at healing brain/cord problems of those who have a presumed low CSF cobalamin level. That requires a flood of unbound methylb12 and adenosylb12 (2 separate deficiencies) that can enter by diffusion. Adenosylb12 from sublinguals can ride along with injected methylb12.
6. They don’t take BOTH active b12s.
7. They don’t take enough active b12s for the purpose.
8. Lack of methylfolate
9. Lack of other critical cofactors.
10. Lack of basic cofactors.
Freddd - Systems Analyst with websites coming soon on methylcobalamin and providing withdrawal planning and reasonable taper schedules for Oxycontin, MSContin, oxycodone, morphine, Valium and more at eztaper.com.
July 19th, 2009 08:32 PM #4Senior Member
- Join Date
- Jun 2007
Re: Active B12 Basics
METHYLB12 STARTUP EFFECTS
version 1.0 - 07/19/09
There are many ideas about what causes the startup effects of methylb12 and some of the other supplements we use in the active b12 protocol. Some may apply specifically to those who have been diagnosed with CFS/FMS or may be more general. As most experimenting with treatments haven't tried a lot of variations there is little mention of how order dependent the startup effects are. Some of the items may appear mutually contradictory. Perhaps there are multiple things going on. Many have offered their ideas about it. I'm trying to summarize here both what I have personally experienced and/or observed and that which others have suggested.
Many of these things are order dependent or cofactor dependent. So, methylb12 can cause a significant startup effect of an energetic nature; enough to scare the sox off of some especially when taken as a fearfull thing. So can TMG, methylfolate and SAM-e. In fact, this is order dependent. If one takes hydroxyb12 and/or cyanob12 for a period of time and then starts any of these things the startup effects are amplified. The first of this group of 4 methylators that is started has the biggest startup effect. The fourth one has very little "methylation" startup effect if any. This hypothesis can be deliberately tested and is accidently tested frequently. The roughest startups I have seen are in those on cyanob12 for years switching to methylb12. In that instance you have a very depleted methylation capacity changing to mb12 which increases methylation capacity. So you have at least four kinds of startup effects of starting methylb12.
- Increase in methylation capacity, large "energized feeling", not due to thyroid.
- Increased intensity of sensation and symptoms and brightening of the senses as the nervous system starts working better and transmission speed increases; large "energized feeling", not due to thyroid.
- Mitochondrial startup - In CFS/FMS where abnormal fatigue and/or burning muscle pain exists lactic acid is produced in anorobic metabolism, a sudden increase of 6 times as much energy production occurs as adenosylb12 (converted from mb12) floods back into the mitochondria converting back to oxidation metabolism; large "energized feeling", not due to thyroid.
- Functional biochemical reactions start suddenly producing suddenly shifting symptoms.
- When neuropsychiatric healing starts moods and personality can start changing dramatically and suddenly and continue for several months. Functional changes happen immediately, healing takes longer.
- Hypothetical detox reaction
- Hypothetical bacterial and viral dieoff as immune systyem starts funtioning properly.
- Hypothetical thyroid reaction often attributed to cause of energetic reactions and changes. As these changes occur faster than T3 and T4 changes occur or can be measured as changing this is questionable. People who try to adjust thyroid hormone doses usually end up making things worse and going back to original dose and being puzzled by the changes not working in expected fashion. When T3 and T4 are measured, usually no significant changes have occurred and maintained.
Some people find glutathione or glutathione promoting substances to be benficial. Generally these are people who have been taking it along with hydroxyb12, a non active cobalamin that does not flood the system with unbound active b12s. Those who have been taking active b12s and who have become used to a high level of unbound active b12s find themselves being plunged suddenly back into b12 deficiency states induced by glutathione and glutathione promoting supplements such as NAC/[COLOR=blue !important][COLOR=blue !important]Glutamine[/COLOR][/COLOR] but not limited to that specific pair or infused glutathione. This appears hightly dependent upon the actual form of b12s being taken. Those taking glutathione or promotors who change to active b12s don't have a noticable reaction but do not have the anticipated effects of active b12s. The glutathione appears to block the effects of having unbound active coblamins in the system, most specifically methylb12. The effect is only noticable when the effectiveness of methylb12 is suddenly turned off.
July 19th, 2009 09:04 PM #5Senior Member
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- Jun 2007
Re: Active B12 Basics
B12 ZONES OF HEALING BY DOSE
Version 1.0 - 07/19/009
Assumptions - Methylcobalamin and adenosylcobalamin are brands tested as 5 star for absorbtion and compared to injection by effect and colorimetry achieving 15% absorbtion or greater in 45 minutes or greater absorbtion in longer times.
• ZONE 1 – Cyanob12, oral or injected any size dose, hydroxyb12, oral or injected any size dose, methylb12 oral in doses of 500mcg or less. Limited results largely confined to those changes requiring lab tests to see; reduced hcy, reduced uMMA, sometimes reduced MCV, occasionally mild changes in paresthesias and peripheral neuropathies over time. From literature and experience
.• ZONE 2A – methylcobalamin sublingual 1mg to 50mg/day, single sublingual doses to 25mg and IM and SC injections up to 5mg. Dose proportionate healing of widespread symptomology. From literature, tests and experiences. Heals neurology, endothelial tissues, epithelial tissues, energy and mood. Some healing, hematological at least, is dependent upon adequate methylfolate being present. It appears that about 95% of healing takes place in Zone 2A & 2B.
• ZONE 2B – adenosylcobalamin sublingual, 3mg to 60mg/day and single doses to 24mg. Less obvious dose proportionate correction and healing of a smaller more specific array of symptoms. Heals muscles, allows them to grow, energy, mood, affects neurology differently from methylb12.
• ZONE 3A1 – Methylb12 injection, 7.5mgs SC to 25mgs SC per dose, 1-2 doses per day or 50-60mgs sublingual (Jarrow) saturating oral cavity for 90-120 minutes, 1-2 doses per day. Brain and cord healing, energy and mood, appears dependent upon sufficient methylfolate being present. Neurological deterioration stops, limited amount of healing
• ZONE 3A2 – Methylb12 injection, 7.5mgs SC to 25mgs SC per dose, 3-4 doses per day or 50-60mgs sublingual (Jarrow) saturating oral cavity for 90-120 minutes, 3-4 doses per day. Substantial brain and cord healing, energy and mood, appears dependent upon sufficient methylfolate being present.
• ZONE 3B1 – Adenosylb12 sublingual (Country Life), 42-60mgs per dose saturating oral cavity for 90-120 minutes, 1 dose per week to 1 dose per month. Brain and cord healing, energy and mood, but different from methylb12 was achieved with adenosylb12
• ZONE 3B2 – Adenosylb12 sublingual (Country Life), 15mgs per dose under upper lip for 90-120 minutes, 1 dose per day to 1 dose per week taken in conjunction with 7.5mg mb12 injection, allowing diffusion into CSF with mb12. Brain and cord healing, energy and mood, but different from methylb12 was achieved with adenosylb12
• ZONE 4 – Intrathecal injection. Enhanced neurological healing in intentionally damaged rats. From literature.
Last edited by Freddd; July 19th, 2009 at 09:17 PM.
July 23rd, 2009 09:45 PM #6Senior Member
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- Jun 2007
Re: Active B12 Basics
BASIC VITAMINS AND SUPPLEMENTS
Version 1 - 07/23/09
I have divided up the vitamins and supplements in several categories. When brands are mentioned, they are essential as we have performed effectiveness tests and some brands don't work at all, a few work very well and most are mediocre. We are trying to maximize the probability of healing.
All needed products are available at www.iherb.com at competitive prices about half of local health food store prices and good service. Using the coupon code RED843 will get a person $5 off their first order. This also gives me a $5 credit I use to supply these vitamins to people unable to afford them.
Absolutely critical minimums for basic healing.
Jarrow Formulas 5mg Methyl B12, under upper lip or tongue for at least 45 minutes for best effectiveness http://www.iherb.com/Jarrow-Formulas-Methyl-B-12-5000-mcg-60-Lozenges/117?at=0
Country Life Dibencozide (adenosylb12) 3mg under upper lip or tongue for at least 45 minutes for best effectiveness http://www.iherb.com/Country-Life-Active-B-12-Dibencozide-3000-mcg-60-Lozenges/1637?at=0
Solgar Metafolin 800mcg http://www.iherb.com/Solgar-Folate-Metafolin-Folic-Acid-800-mcg-100-Tablets/13961?at=0
Jarrow B-Right b-complex, 1 capsule twice a day http://www.iherb.com/Jarrow-Formulas-B-Right-100-Capsules/110?at=0
Potassium, your choice of brand and form - this is insurance against hypokalemia triggered by sudden healing and potentially fatal - if you have blood tests, potassium is usually checked, midrange, around 4.5 is good. Some people will have problems at bottom of "normal" range, 3.5-4.0.
Omega3 fishoils - essential for myelin sheathing for the nerves, many brands will do, 2-6+ capsules per day, I buy it at Costco, house brand. This is available in many supermarkets.
Essential, usually needs supplementing
Zinc - 50 mg
D - 3000-5000 IU total
A&D from fish oil, 10,000-(400-800-1000) Vitamin A should be 10,000, D might be any of 3 numbers with additional D to be taken
Vitamin E, Gamma complex http://www.iherb.com/Now-Foods-Gamma-E-Complex-Advanced-120-Softgels/299?at=0
Vitamin C – 4000+mg/day
Possibly Critical Cofactors, add after initial stages, any number of these in any combination may be required for maximum effectiveness
SAM-e - 200-400mg/day, makes methylb12 more effective, possibly much more effective, increases energy, improves mood
TMG - enhances SAM-e, methylb12, l-carnitine
L-carnitine fumarate (acetyl might work better for some), works with adenosylb12, lack can completely prevent effectiveness of adenosylb12, increases energy, aerobic endurance, improves mood
Alpha Lipoic Acid - enhances l-carnitine and adenosylb12
D-Ribose - enhances adenosylb12, l-carnitine, alpha lipoic acid, improves exercise recovery and energy
Additional possibly helpful cofactors
many other supplements
THINGS TO AVOID
Glutathione and glutathione precursors such as NAC and glutamine, undenatured whey. The glutathione induces immediate active b12 deficiencies, apparently by converting active methylb12 to inactive glutathionylb12 and rapidly excreting it.
DEEP NEUROLOGICAL HEALING
The most frequent neurological problems are peripheral neuropathies, often in characteristic stocking-glove distribution. Sublingual methylb12 and adenosylb12 appear quite satisfactory in healing these in a sizable percentage of the time. There exists a class of more severe neurological damage. This is sometimes identified as subacute combined degeneration and takes place in the brain and spinal cord. This can occur in people severely deprived of active b12s by diet or lack of absorbtion by other reasons. Another hypothetical cause may occur in people who for unknown reasons have a depressed Cerebral Spinal Fluid cobalamin level compared to their blood serum levels. In addition there may be mood and personality changes, hallucinations, sensory changes, psychosis and an abundance of neuropsychiatric changes. Some of these changes can be corrected with sublingual active b12s but some require much higher levels of active b12s than are usually achieved with sublingual tablets. In these situations usually only injections will help.
The usual kinds of b12 injections, cyanocobalamin and hydroxycobalamin, are virtually always ineffective on any schedule. The once a month schedule for cyanob12 and the once each three months schedule for hydroxyb12 is useless as well. Daily sublingual active b12s are far superior to these in every way. These occasional injections were developed as a means to prevent people with pernicious anemia from dying. They do not promote neurological healing in any significant way. In order to promote neurological healing methylb12 injections of larger than usual size and greater than usual frequency must be used. My own experience is given below and corresponds with the ZONES defined on another posting. All injections are subcutaneous as that produces a slower diffusion into the blood maintaining a steadier serum peak.
1. Single or multiple injections per day to 5mg methylb12, each injection. ZONE 2, fully equivalent to sublingual tablets, did not stop continued neurological deterioration and progressive numbing of feet of 15 years duration.
2. Single 7.5mg methylb12 injection per day stopped the progressive numbing of feet of 15 years duration. ZONE 3A1
3. Two 7.5mg methylb12 injections per day caused some small reversal of numbing of feet and of neuropsychiatric symptoms. ZONE 3A1
4. Four 7.5mg methylb12 injections per day have caused substantial sustained reversal of numbing in feet and of neuropsychiatric symptoms. ZONE 3A2
July 28th, 2009 05:12 AM #7Senior Member
- Join Date
- Jan 2008
- Lockerbie, SW Scotland
Re: Active B12 Basics
The B12 Issue.
This is a long posting, divided into three parts (10,000 character limit per posting), because it has to try to encapsulate a wide-ranging subject. A good understanding of what Vitamin B12 Deficiency is, how it harms you, and the major issues surrounding the problem, makes it that much easier to tackle it. There is no "magic wand"; if B12 Deficiency damage is what is wrong, you have to take persistent, logical steps to deal with it; and you have to do so in the understanding that no two of us need precisely the same treatment.
The B12 Deficiency thread on WrongDiagnosis works because the people on it are open-minded, critical of the “Because I’m a doctor” brand of authoritative arrogance, inclined towards self-experimentation, willing to share results, and good at doing Net research. We're also pretty good at picking out fraudulent, misleading, and downright dangerous claims. We know that doctors are not infallible, are not omniscient, and don’t necessarily have access to the best forms of treatment; and we also appreciate that most doctors understand those facts too.
Once you have read to the end of these three postings, read the thread – from the latest posting backwards - for a good couple of hours, to get an idea of how we work together, what can be achieved, and what needs to be done to achieve it.
Starting the thread from the leading edge means that you see the conclusions first, rather than having to wade through the discussions; the arguments – though interesting, reasoned, and relevant at the time - can be a bit tedious when read as history! “Cut to ‘The Chase’” is, therefore, good advice.
What the thread does best is to educate people into understanding this thing. Readers suffering serious “brain fog” will find understanding easier with an “unfogged” friend alongside – or, at least, a pencil and paper! “Brain fog” is something every one of us here has been through; we therefore all know what it’s like; however, be assured – it gets better!
Almost without exception we are all B12 Deficiency sufferers who - unlike a lot of others out there - are steadily improving. The site started on 17th Feb 2007; by 0600GMT on 28th July 2009, it had received 937,798 visits, and was averaging 1,636 visits/day. B12 Deficiency is a major problem, and the thread helps a very large number of people.
There are three tests whose results can point towards (or away from) a diagnosis of B12 Deficiency. They are:
a. Serum B12 level.
b. Urinary methylmalonic acid level.
c. Serum homocysteine level.
If you have already been supplementing with forms of Vitamin B12, then the value of doing those tests will have been compromised. Supplementing will make the level of B12 in your blood high, but that does not mean that damage caused by prolonged deficiency will somehow have been instantly rectified. Pulling a knife out doesn’t immediately heal the wound. Serum B12 is merely circulating - it is doing nothing else. It has to make its way from your bloodstream and into your tissues to do its work – and that can take some time. As this process continues, your serum level will steadily fall. Testing serum levels shortly after supplementation is like looking at a river in flood and concluding that it is always that high.
In our experience, many doctors do not really understand the extent and variety of damage B12 Deficiency causes; they have difficulty in diagnosing it; and they commonly treat it on the basis of an outmoded protocol which takes no account of current knowledge on the condition. They tend to believe that the condition is uncommon – whereas it is rife; they rely heavily on the Serum B12 Test - without an appreciation of what it actually detects, or of its limitations; and they genuinely believe that a few tiny, infrequent injections will put right the damage done by months, or even years, of deficiency. Doctors will also routinely ignore the evidence of their own eyes and experience, and use the Serum Test to RULE OUT the possibility of B12 Deficiency. The patient’s chances of a correct diagnosis are further hindered by the fact that many countries set “acceptable” B12 levels far too low – typically 200pg/ml. This level is based on the misconception that anaemia is the commonest presenting sign of B12 Deficiency, whereas – in fact – serious neurological signs/symptoms set in at about 550-500.
Doctors also tend to believe that there is some kind of “optimum” upper level for Serum B12, and to stop treating it once the patient’s serum level has risen a bit. This notion arises from a fundamental misunderstanding of statistical method. If you define a minimum limit for a quality measured in a population of human beings (serum B12, in this instance) the statistics of nature automatically also throw up a “maximum” which has no relevance. Here’s an easy-to understand analogy.
If you recruit men to a drill squad on the basis that “no man is to be less than six feet tall” then – despite the fact that all you have done is to set a minimum height – you still recruit a range of tall men. One of them will be the tallest; he is just thrown up by nature; his stature is not an “upper limit” – it’s simply what happens.
Optimum serum B12 level is “as high as possible”. For those of us susceptible to deficiency problems, 1,000pg/ml seems to give a safe leeway. There is no “upper” limit. It is pure nonsense based on misunderstanding.
With any other illness, the measure of “cure” would be the extent to which the signs/symptoms retreat. B12 Deficiency problems are no different, and it is difficult to understand the medical profession’s apparent obsession with serum levels. Recovering deficiency sufferers should measure their progress by improvement in health, not by serum level.
For reasons not really understood, beginning supplementation often causes neurological symptoms to worsen for a few weeks. The common experience is that the effect soon goes away. One of the advantages of a website such as the thread is that correspondents can obtain support from a community of fellow sufferers. Knowing that you are not alone can be a great help.
July 28th, 2009 05:13 AM #8Senior Member
- Join Date
- Jan 2008
- Lockerbie, SW Scotland
Re: Active B12 Basics
The key to solving this problem lies in understanding it.
There is a group of chemical compounds called "cobalamins"; they are structured partially around a single atom of the metal cobalt; and about 38 have been discovered, or manufactured. Almost all of them will give a +ve reading in the simpler B12 Serum Tests. Of these 38, though, only two naturally-occurring ones have immediate mammalian relevance; these are methylcobalamin (m-B12) and adenosylcobalamin (ad-B12). Two other manufactured ones - hydroxocobalamin (h-B12) and cyanocobalamin (c-B12) - can be utilised by mammals, but they first have to be converted to m-B12 or ad-B12 by inefficient metabolic reactions. Both are comparatively ineffective as treatments for B12 Deficiency. Furthermore, cyanocobalamin is known to cause blindness in carriers of a faulty gene leading to a condition called "Leber's Hereditary Retinopathy"; and anecdotal evidence strongly suggests that it also has other low-grade, toxic effects. There have been calls to the World Health Organisation to ban its use. Collectively, these 4 substances get called "Vitamin B12”, or “Cobalamin” and the remainder “B12 Analogues”, or “Cobalamin Analogues”; it can be unhelpful at times.
M-B12 and ad-B12 are readily available; we see no good reason to use h-B12 or c-B12 at all, but those are what most doctors will attempt to treat B12 Deficiency with – if they recognize it in the first place. Bear in mind also that one of those two substances is toxic.
M-B12 and ad-B12 are present in most cells in tiny quantities. M-B12 is made by bacteria which originate in the soil, and animals can interconvert the two substances. Some animals – particularly ruminants – can harness the bacteria directly, and so obtain B12 internally. Humans, however, can obtain B12 only from animal sources or from supplements. Despite what you may occasionally read, there are NO plant-only sources. M-B12 and ad-B12 are vital to our survival, and are implicated in over 600, widely-differing, metabolic processes; that is why deficiency can lead to so many different, apparently unrelated, signs/symptoms. Above these postings, there is a list of possible signs, symptoms, and predisposing factors related to B12 Deficiency. I realise that it’s breathtaking, but if – by the end of these present postings – you’ve understood what we are driving at – you’ll also understand why there can be so many symptoms.
An excellent background to the whole subject is “Could it be B12” by Sally Pacholok and Jeffrey J Stuart. Its availability varies, but you can usually find it on Amazon: http://www.amazon.co.uk/s/ref=nb_ss_b?url=search-alias%3Dstripbooks&field-keywords=Could+it+be+B12%3F&x=15&y=19
(If you do buy this book, bear in mind that it is frozen in time, whereas the thread constantly rolls forward, and is therefore a reflection of the latest research we find on the subject, as well as a showcase for the results of personal experimentation by correspondents.)
B12 assimilation is complicated; it is removed from your food and passed on to your metabolism in a series of complex chemical reactions, dependent – in part - on your stomach’s ability to produce hydrochloric acid, but also on its capacity to synthesise a glycoprotein commonly called “Intrinsic Factor”. An inhibited ability to produce this substance tends (for historical reasons now largely irrelevant) to be called “Pernicious Anaemia”. The area of the gut at which B12 passes into the bloodstream is the terminal ileum (Ie the lower end of the small intestine.) Transport from the gut, through the bloodstream, and into the cells depends – to a large degree – on proteins called transcobalamins.
Manufactured supplements do not follow this complex assimilation path, but are formulated to achieve direct access to the bloodstream either sublingually, or via injection. Simply eating such supplements causes them to pass through you largely untouched.
Ad-B12 (commercially marketed as “dibencozide”) is a lead-player in "Krebs' Cycle" - reactions which maintain energy production in your cells; low ad-B12 leads to chronic fatigue, lassitude, muscle pain, muscle wastage, low exercise tolerance, etc. However, cells need energy, and low intra-cellular "power levels" can affect you in many other ways as well – the speed and efficiency of nerve impulse transmission, for instance.
M-B12 is a big-hitter in DNA replication and protein synthesis; low m-B12 means that cells do not repair or replicate efficiently, and/or that they do not produce ligands (things such as hormones, neurotransmitters, enzymes, etc) with the efficiency they should. The myelin of your nervous system becomes patchy, you experience paraesthesias (strange, inappropriate, sensations, and pains), and your co-ordination starts to fail. The cells covering and lining body cavities and organs are not properly replaced (“Beef tongue” tends to be an early sign.) Your immune system cannot churn out white cells quickly enough to cope with infection. Alongside demyelination within the brain, neurotransmitter production slows. These problems cause poor memory, “brain fog”, personality change, paranoia, hallucinations, delusional thinking, etc. B12 Deficiency is – unsurprisingly – frequently misdiagnosed as Alzheimer’s Dementia, Parkinsonism, or Multiple Sclerosis.
Vitamin B12 Deficiency can be caused by many different factors; the following list is probably incomplete, since we keep coming across previously unmentioned causes:
(a). A diet containing insufficient B12 (Vegetarianism, Veganism).
(b). An inadequate supply of Intrinsic Factor due to autoimmune problems, (“Pernicious Anaemia”), or to stomach surgery.
(c). An inadequate supply of stomach acid, due either to medical conditions (eg Gastric Atrophy, Hypochloridia), to over-use of Antacids, of H2 Histamine Receptor Antagonists, or of Proton Pump Inhibitors; or to stomach surgery.
(d). Coeliac Disease; gastric infection with Helicobacter Pylori. Some forms of intestinal bacterial overgrowth.
(e). Genetic Predisposition. (Eg: inadequate synthesis of transcobalamins; inhibited ability to interconvert B12 forms)
(f). Some medications (eg Metformin), and many oral contraceptives.
(g). Nitrous oxide analgaesia and/or anaesthesia.
(h). Pregnancy; breastfeeding.
(j). Intestinal parasites – particularly tapeworms.
(k). Diets overly-rich in animal products.
(l). Gall bladder problems
Those last two demand some explanation:
(a). Diets, where meat is the predominating feature - eg those of hunters - have particularly lengthy digestive transit times. This can cause the meat in the gut to putrefy rather than to digest. The bacteria causing this can block the uptake of B12.
(b). B12 is difficult to come by, as well as being water soluble. To counter this, animals have evolved a system for scavenging and re-cycling it. The processing is particularly dependent on healthy functioning of the biliary system.
July 28th, 2009 05:14 AM #9Senior Member
- Join Date
- Jan 2008
- Lockerbie, SW Scotland
Re: Active B12 Basics
On the thread, we try to give correspondents the information they need to work in partnership with their doctors; if the doctor either knows the subject, or is receptive, then the partnership will probably flourish, and we see many examples. Unfortunately, there are also altogether too many instances where doctors turn out to be stubbornly unreceptive, or arrogantly opposed, to what the patient has to say. For patients faced with this predicament – and unable to find a more co-operative physician - we can give intelligent advice on dealing with the condition in a more “Do-it-Yourself” manner, based on the experiences, Net research, discussions, and self-experimentation of the people here.
There are three fundamental points:
(a). What we discuss on the thread is no more than the complex results of a simple nutritional deficiency, which, like any other, you can (if you absolutely have to) treat yourself. Furthermore, the supplements mainly needed – m-B12 and ad-B12 – have no known toxicity, a fact frequently stated in the literature, and borne out by considerable experience on the site.
(b). What we discuss and suggest works.
(c). The basic substances you need, in order to begin putting matters right, are readily available, throughout most of the world.
Most correspondents find using sublingual (let it dissolve under your tongue) methylcobalamin tablets, bought on line from the US, gives a good start on the whole business of rectifying the damaging effects of B12 Deficiency. You have to do a little more besides – but I’ll lay out the basics which most of us have found effective. Many of us (particularly those outside of the US) deal with http://www.iherb.com/ . They're in California, are well-stocked (they have all of the listed items); they're also inexpensive, reliable, and fast. There are sound reasons for the brands mentioned - which we can go into as well, if you want. However, the fact that they work for most people is – in itself – probably good enough.
(1) Jarrow Formulas Methyl-B12 5000mcg. http://www.iherb.com/Jarrow-Formulas-Methyl-B-12-5000-mcg-60-Lozenges/117?at=0 (These are sublinguals - most correspondents take 2 - 4 spaced across the day; however, I'd suggest starting on one per day, and gradually working up.) Keep each one dissolving slowly in your mouth for as long as possible. Putting it between your upper lip and upper gum is a good way to do it.
(2) Country Life Active B12 Dibencozide 3000mcg. http://www.iherb.com/Country-Life-Active-B-12-Dibencozide-3000-mcg-60-Lozenges/1637?at=0 (Also sublingual.) "Dibencozide" is a commercial name for adenosylcobalamin. One per day seems a good start. Again, make it last.
(3) A source of the other B-Vitamins. There are issues with very high doses of Vitamin B6 for some people http://dietarysupplements.info.nih.g.../vitaminb6.asp so we suggest that you read up on the subject. The B-complex form most correspondents use is Jarrow Formulas B-Right. http://www.iherb.com/Jarrow-Formulas-B-Right-100-Capsules/110?at=0 One in the morning, one in the afternoon seems about right.
(4) L-methylfolate. Many of us can synthesise this from folic acid, but l-methylfolate itself is actually available on the market, and is a far better idea. Solgar Metafolin 800mcg is adequate – and relatively cheap. http://www.iherb.com/Solgar-Folate-Metafolin-Folic-Acid-800-mcg-100-Tablets/13961?at=0 One per day for a start seems to be enough.
(5) At least 500mg of Omega Oils daily. Fish oil capsules will do if you're not a vegetarian. If you are, there’re plenty of veggie alternatives. Omega Oils provoke quite a lot of discussion, and you may have to experiment to find what works best for you.
There are other substances as well - you need to find them for yourself on the basis that some things help some people a lot, whilst doing nothing noticeable for others. There is plenty of discussion of them, and Freddd is the expert. A readable book on the subject is “Nutrients for Neuropathy” by John A Senneff. http://www.amazon.co.uk/s/ref=nb_ss_w_h_?url=search-alias%3Dstripbooks&field-keywords=Nutrients+for+Neuropathy&x=16&y=15
Your kidneys perceive "free" B12 as a foreign substance, and will start straining supplementary B12 out of your blood immediately. The transcobalamins have already been mentioned; the task of one of them –TranscobalaminII - is to pick up B12 from the ileum and to move it into the cells of your tissues - in very much the same way that haemoglobin moves oxygen around. B12 bound to transcobalamins is "invisible" to your kidneys. TCII works a sort of shuttle service, picking up B12 from the ileum, moving it into a cell, and then returning – via the circulation – to the ileum to keep on picking up, and dropping off.
The binding of B12 to TCII is the nub of a persistent medical argument that there is no point in administering large doses of B12 - because there are only finite numbers of TC molecules. Thus (it is argued) - once all TC molecules are "saturated" - there is no point in adding more B12, because your kidneys will just dump it. The argument makes no sense, because TCII is not actually involved in transporting supplemental B12 within the bloodstream.
B12, injected or taken sublingually, creates a concentration gradient between blood and tissues, and therefore simply diffuses into cells through their walls. No biological transportation system is involved. The Laws of Physics are not mocked - although your kidneys will still eventually dump whatever free B12 they can manage to catch.
We have learned – from our own experience and from Net research – that increasingly large doses of methylcobalamin, delivered in increasingly aggressive ways – sublingual administration, subcutaneous injection, intravenous infusion - to the target tissues appear to be able to catalyse the reversal of distinctly more “hopeless” and harmful types of deficiency damage. So far as severe, entrenched, unresponsive neurological problems are concerned, intrathecal injection (directly into the CSF within the space surrounding the spinal cord) is probably as far as it is possible to go. However, it is a little bit difficult on a Do-It-Yourself basis!
Patients are often told by their doctors that some signs/symptoms are “irreversible” - particularly if left undiagnosed and untreated for a long time. Evidence on the thread, however, is that even the most entrenched of symptoms will retreat if you assault them vigorously enough, and persistently enough. Just what that entails for any given individual tends to be the major subject for discussion.
August 3rd, 2009 12:04 AM #10Senior Member
- Join Date
- Jun 2007
Re: Active B12 Basics
Active B12 Titration Methods
These methods can be applied to either active b12; adenosylb12 and methylb12. If a person is having a lot of startup reaction to mb12 then I would suggest starting with adb12. Either should be started on a base of the basic vitamins and minerals; A, D, C, E, B-complex that includes P-5-P and pantethine and without Cyanob12 (Jarrow B-Right, twice a day), methylfolate, magnesium, calcium, zinc (50mg) and Omega3 oils. These are so essential that they often go without saying or being taken. They are absolutely essential for healing and tissue formation. There are many other things that may be beneficial and aid healing tremendously and some critical cofactors that are essential but after the active b12s are started as they don’t work as well or at all when the b12 is short.
I will use mb12 as an example but this applies in the same way to adb12 (dibencozide). First there are a few general things to consider.
- Our nervous systems notice difference
- Unbound active b12s diffuse into our systems
- Higher serum levels of unbound active b12s diffuse “deeper” more quickly making more intense change.
- Maintained serum levels diffuse “wider” but less intense change.
- After a period at a given dosage level equilibrium is reached and change is maintained but not increased, healing continues at that level but not more. Healing is dose proportionate but not linearly so.
- An estimated 250mcg of unbound active b12 accounts for almost all of the perceived intensity until very high levels are reached. That is a 5mg tablet is not particularly perceived as more intense than a 1mg but a 1mg is more intense than ¼ of a 1mg.
- If a particular level is maintained all day equilibrium is reached more quickly that if that level happens once a day for 1 hour.
- When equilibrium is reached, perceived intensity diminishes quickly.
- When a sublingual tablet is removed from the mouth via physical removal or chewing and swallowing the increase in intensity stops within minutes. One can actually hold at a certain level of intensity this way.
- Approximately 15% is absorbed in the first 45 minutes of tissue contact time, about 1% each 3 minutes. After 45 minutes that drops to about an additional 1% each 5 to 10 minutes until gone. Maximum absorbtion appears to be in the area of 25%. This applies only to the 5 star brands. A fine degree of control can be obtained via a timed method as well as cutting the tablets.
Start on day 1 with 1 quarter tablet of Enzymatic Therapy 1mg or Jarrow 1mg mb12 or Country Life adb12. This can amount to a 30-60mcg absorbtion, 3x that for the adb12. Much of this will go into the tissues within the actual period of absorbtion. Taking additional quarters can be timed so as not to increase intensity. Taking a half will increase the intensity. If one only takes 1 quarter a day it is unlikely to ever reach equilibrium. I would suggest, that as long as the intensity is tolerable to take at least 8 quarters a day. After a few days, as long as comfort is maintained try ½ tablet. It’s not that there won’t be symptoms shifting and intensification, there will be. We are just trying to keep the intensity under control.
Do as above with ½ or whole tablets. Over the days increase to ¼ of a 5mg, then ½ of a 5 mg tablet and finally to a 5mg tablet. At 5mg tablet 4 times a day most people will reach a stable equilibrium that is at the maximum short of injections or multiple tablets per dose. However, once one reaches this point, 2 x 5mg tablets at a time or 4x5 may be a just barely noticeable difference from 1 tablet, if there is any additional effect at all. At around the point of 50mg in 2-3 hours with multiple tablets at a time a threshold effect may be noticed. This is the point approximately equivalent to a 7.5mg injection, the point at which the Japanese research and my own experience indicates up regulated neurological healing may occur. Above that dose no additional noticeable effect occurs at up to at least 25mg injection. This may only apply to people with CNS/CSF deficiencies. That is unknown at this time. There are current Japanese studies being done with 50mg IV infusions that may define this zone more clearly. This is the area I’ve labeled as ZONE 3 on some other posts which I’ll repost here. A fast high dose repeated for several days will soon loose it’s startup effects and will rapidly diminish that of smaller doses. Approximately 20mg on day one may cause a lack of startup effect on day two for any dose less than approximately 2-5mg.